Managing patients’ reports of abdominal pain and irritable bowel syndrome-like symptoms during quiescent inflammatory bowel disease: a role for shared sensemaking

Patients with inflammatory bowel disease (IBD) are often faced with distressing and confusing abdominal pain during remission. Some people respond adversely to healthcare professionals’ (HCPs) suggestions that this pain and related symptoms are due to secondary irritable bowel syndrome (IBS). Exploring how HCPs view, manage, and explain pain during quiescent disease may provide insights into how communication can be improved to increase understanding and mitigate negative responses. In-depth semi-structured interviews were conducted with 12 IBD-nurses ( n = 4) and gastroenterologists ( n = 8) working in the United Kingdom or the Netherlands. Reflexive thematic analysis was used to analyse interviews. Findings suggest that HCPs pay relatively little attention to pain when there is no underlying pathology and prefer to concentrate on objectifiable causes of symptoms and treating disease activity ( Theme 1: Focus on disease activity, not pain and associated symptoms). Explanations of abdominal pain and IBS-like symptoms during remission were not standardised ( Theme 2: Idiosyncratic and uncertain explanations for pain during remission). Processes of shared decision-making were outlined and shared sensemaking was reported as a strategy to enhance acceptance of IBS explanations ( Theme 3: Shared decision making versus shared sensemaking). Future work should focus on establishing how pain during remission may be best defined, when to diagnose IBS in the context of IBD, and how to explain both to patients. The formulation of standardised explanations is recommended as they might help HCPs to adopt practices of shared sensemaking and shared decision-making. Explanations should be adaptable to specific symptom presentations and different health literacy levels.